Day +438: Bumping Along

It's day +438 and our bumpy road has unfortunately returned as I am writing this update from the hospital. Max was admitted last night after his ear pain continued yesterday, along with unusual fatigue and a fever to the point that, per doctors orders, I had to call the BMT doctor on call. He is resting comfortably today and we are hoping to be released tomorrow or Tuesday at the worst. At this point, the doctors think that he is still experiencing painful ear infections in both ears and it is a bit concerning that they have not cleared by now, given the antibiotics that he has been on the past 8+ days. So, he is getting IV antibiotics around the clock along with antibiotic drops in both ears. They have also drawn multiple cultures of his blood and nasal secretions to see if there is any "tough" bacteria in his body that they may need to combat with some other type of medicine.

We were also down here on Friday most of the day and did see an ENT while we were here. The ENT was able to clean his ears out and take a good look and felt that the infection was still there because there was so much gunk in them that was blocking the antibiotics from treating where it was needed.

It's hard to believe that we are actually in the hospital for ear infections but, it is a perfect example of the BMT world we are living in and the type of treatment that can be required to help Max through. Max is remaining generally calm about everything and did an amazing job yesterday in the Emergency Department (where we have to come through after hours and weekends). Unfortunately, it took four tries to get his IV placed and that is not fun for anyone! He weathered it like a champ, better than he has done in sometime. Obviously, that helped me tremendously. I have been able to also remain calm and rational about this whole situation so far and that is somewhat new for me, coming in to the hospital like this. Usually both Max and I are a mess emotionally. It's so difficult to give up control over your life and re-enter like this. You never know what is really going on and how long you might be here, etc. But, I think the events of the past couple weeks have helped us both to deal this weekend. We have come to grips with the reality of where we are and our current "normal" and we all just know we have to deal with stuff like this for a while yet. We also know that eventually it will not be this way. In the meantime, we are all wearing our "Livestrong" bracelets from the Lance Armstrong Foundation so that we can remind ourselves to dig deep and get through when we need it.

Max's biggest struggle today is missing his doggie, Spud. He doesn't want to talk about him or think about him as it makes him sad. He is in love with that dog and has missed their regular morning couch cuddle today.

Matt has told me that Alex and Ellee are hanging in there pretty well. They were sadly looking out the storm door yesterday as Max and I pulled away to head to the hospital. They don't want this to happen either...they are tired of it too! Thank goodness for my mom and dad and Matt's mom who quickly jump in to help out with them everytime we find ourselves in this kind of situation. What would we have done without out wonderful families to hold us up this past 17 months!!

Matt and I are taking this situation as yet another data point in our decision making about how to balance things correctly for Max moving forward. We feel like doing this regularly is not sustainable and we want to avoid it as much as possible for all of our sakes. Thus, we remain anxious to have our discussion with Dr. Davies in July regarding the big picture and how best to navigate things moving forward.

The only advice I'd like to leave you with as I end today is don't ever take your family time for granted. Rejoice in the simplicity of just being at home all together, even on the boring days. These experiences of separation for all of us have made that time together so special and precious. Hope you can make the most of it too.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)